The Eden Alternative was the brainchild of Dr. Bill Thomas, a geriatrician who proudly describes himself as “a nursing home abolitionist.” Dr. Thomas identified isolation, loneliness, and boredom as factors that make residents of many nursing homes feel
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that life is not worth living. In Eden nursing homes and the six-to-ten-person Green House residences Thomas subsequently developed and has promulgated, there are plenty of paid staff to spend time with each resident. Plants, pets, and children are a natural part of life in these small communities. And everyone in an Eden or Green House facility — from the residents to nursing aides to the directors and administrators — has a voice in decisions that affect communal life.
This is more than idealism. It is the sort of strategic change that transforms an institution into a community. By giving residents, nursing aides, housekeepers, and cooks a say in decisions. Dr. Thomas’s models foster a sense of ownership among everyone involved. Part of the return on investment here comes in forms of creativity and energy. People willingly contribute to things they own. If you are familiar with traditional nursing homes, what strikes you in walking into an Eden facility or Green House is that the place is alive! There are sounds: birds chirping or music playing with people singing, and sometimes groups of children laughing. Instead of medicinal odors, you are likely to smell freshly baked bread or cookies. Inevitably, not everyone in
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these facilities is having a good day every day. People are there because they are ill, senile, or otherwise frail. Still, as long-term care facilities go, the mood is remarkably bright and, somehow, more natural.
Similar initiatives include Wellspring longterm care facilities and the Pioneer Network. Importantly, these efforts concurrently strive to improve quality of care and the quality of the workplace and work life for the homes’ nurses, aides, and support personnel. Experience shows that they are overwhelmingly well accepted by residents and staff.
Despite higher levels of staffing, off setting savings make these approaches cost- effective. Savings accrue through fewer emergency hospitalizations and dramatically lower turnover among employees. So far, Eden Alternative, Green House, Wellspring, and Pioneer Network facilities are still considered “alternative” to the large majority of nursing homes, but they are gradually taking root and blossoming here and there across the country.
It would be easier to describe how to deliver the best care if there were one model or brand of systems that worked. Instead, happily, there are many.
Consider the hypothetical stories of three
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aging siblings: On Long Island a seventy- five-year-old man with diabetes, low vision, and early Parkinson’s has his care and social services coordinated by a case manager employed by the Jewish Family and Children’s Service. Across the country, his seventy-one-year-old brother, who has heart failure, atrial fibrillation, prostate cancer, and a colostomy after successful colon cancer surgery, receives care in his senior housing apartment through a PACE program in San Francisco. Their baby brother, who is just sixty-nine, has chronic lymphocytic leukemia, emphysema, and diabetes, and sees a family physician who works within a medical home that is part of Group Health in Seattle.
These brothers are served by different models of service delivery, but in each case their care is coordinated, medically up-to- date, and focused on their well-being, not just their diagnoses.
As a nation and as states and local communities, we do need revised laws and regulations and new investments in our social infrastructure of care. But those changes are merely instrumental. The bigger challenge we face is not regulatory or statutory, but cultural. Caring well for people through the end of life will require
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nothing less than a genuine social and cultural transformation. Simply put, it is time for our culture to grow the rest of the way up.
Our challenge is to understand illness, caregiving, death, and grief as inherently difficult, often turbulent, but entirely normal stages of life. Society, including medical and other professionals, can assist in many ways, but the need for help must not pathologize or medicalize people’s experiences.
This is a lofty vision, but if our culture could mature in this way, a range of social and policy ramifications would naturally follow and we would find that solutions are neither as complicated nor as costly as many fear.
By connecting the dots among social services, community services, health care, and even basic civic services in authentically person-centered ways, we can achieve real reform and substantial cost savings. By expanding the problem, previously daunting, seemingly insolvable social responsibilities become approachable, affordable, and life-affirming.
Examples of communities in the act of caring can shine a light on the way forward. Three stories from northern New England, where I live and practice, represent for me
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ways that communities can grow and local cultures mature.
English professor Philip Simmons wrote about his life with ALS, also know as Lou Gehrig’s disease, in Learning to Fall. During the last year of his life the NPR radio program All Things Considered ran a series of stories about how Simmons and his family were coping with his illness. When he died in July 2002 at his home in Center Sandwich, New Hampshire, NPR posted this quote from Simmons on its website: “It takes a village to care for me,” he said, referring to a group called FOPAK, short for Friends of Phil and Kathryn, which had supported them during his illness. “To see a group like this working as well as it does, and to see a community as healthy as this one is, I would hope, would cause people to reflect on the possibilities that are there in their own communities. Because this can be done. Community is possible. Relationship is possible. It’s up to us to create it.”
Reflecting a similar experience, in December 2006, after my patient and friend Nancy Nye died, her husband, Richard Schramm, and daughter, Hope Nye Yeager, sent this note of gratitude to the members of the North Universalist Chapel Society in Wood- stock, Vermont:
We and our families would like to thank the community for all its support for Nancy Nye and us over the past two years. We have felt cradled in the hands of this community in a way that is virtually indescribable. This is our humble effort to convey to you all the many good things that you have done for us. We’re sure we have missed some but this will give you a flavor of what Nancy and we experienced. There are so many people involved we will not mention any specific names. This is a thank you to the entire community.
This community:
Created a quilt with 99 messages of love and support
Provided soups, salads, casseroles, desserts
Brought meals to us and us to meals Wrote notes, cards, and e-mails, left phone messages, sent flowers Helped us with second opinions, medical contacts, sorting out options, special remedies Put our gardens to bed, stacked our firewood, cleaned our garage Loaned us CDs and videos, medita-
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tion tapes, books
Led us in yoga classes, took us on walks
Had a meditation group with Nancy at our house
Joined us at the doctor’s office and infusion rooms
Visited at the perfect times
Offered childcare, cleaning, places to escape to
Organized meals, visits, researched all kinds of things
Led a Star Island healing ceremony
Gave us a gift of Star Island souvenir photos
Gave us toys and gifts for forrest, free tickets to Billings Farm
Loaned us a juicer, body pillow, baby monitor, toys
Came and sang to Nancy at home
Stood together here in silent respect for Nancy at the beginning; cheered together after her successful first year; and hugged and cried together with her when she neared the end
Were greeters, food servers, music providers, flower organizers, video recorders, and speakers at the memorial service
Came to that service to grieve and to
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celebrate Nancy’s life with us For all these things and more, our family will be forever grateful. This is truly a caring community.
Hervey Durocher had retired in his late fifties from a successful career in accounting to follow his love of farming. He was sixty-nine and suffering with advanced pancreatic cancer. When I met him, he had been hospitalized for a bile duct infection, which, fortunately, had rapidly responded to IV antibiotics. His oncologist asked our team to help Hervey and his wife, Joan, in clarifying their goals for care. When we discussed his goals, Hervey was emphatic. “I just want to get back up on my tractor,” he said. It was his way of saying, “I just want to go home.”
Joan assured us that they could manage at home and that there would be plenty of help from family, friends, and neighbors. She proudly described her husband as a strong, gentle man who was always ready to help others. That afternoon, I spoke with their family physician, Dr. Donald McDonah, who happens to be the medical director of the hospice program in their rural southern New Hampshire community. Dr. McDonah
and I coordinated plans for home hospice care.
The next day, we discharged Mr. Duro- cher. Hervey died peacefully in their family’s home a couple of weeks later.
One afternoon about a month after Mr. Durocher’s death, I received a letter from Joan with a card from his memorial service and a request that I give her a call. When we spoke by phone, Joan described the funeral at the local Congregational church. She told me that as the funeral procession wended its way through the rural country roads from their church to the cemetery, past fields and saltbox farmhouses, every farm had its tractors turned to the road with their headlights blazing in silent memorial for Hervey.
In their grief and the love for a friend they had lost, this community of men and women from varied backgrounds, faiths, and political beliefs stood together on common ground.
When people are engaged in communities, friends and neighbors tend to rise to their and their families’ needs. One might chalk it up to adversity bringing out the best in people. There’s truth in that. But what I have witnessed again and again is deeper and more profound than kindness. It is the
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natural, uncontrived, and unconstrained way that people living in community — rather than merely in proximity — respond to one another. In healthy human communities, it would seem odd to do anything less.